Spirits_v1.no3.1995.06-07.pdf
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- Spirits_v1.no3.1995.06-07.pdf
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NATIONAL
WOMEN
&
HIV/AIDS
PROJECT
Spirits
Lifting as we climb
Volume l Issue Ill
Dear Reader,
As Eleanor Roosevelt said prior to World War II, "This
is no ordinary time." As Congress and others in this
nation move toward mandatory HN testing of women
of childbearing age, it is more important than ever that
you speak out-write to those at the Center for Disease
Control and Prevention and at Health and Human
Services and tell them what you think about mandatory
testing.
June/July 1995
HIV survey of childbearing women
draws controversy, is suspended
AIDS Legal Referral Panel Womens AIDS Network, San Francisco
The HN Survey in Childbearing Women, the largest
source of epidemiological information about HN infection in women, appears to be the latest casualty in the
never-ending fight over mandatory and non-confidential
testing.
Facing strong political pressure and legislation that
would fundamentally change the study, the Center for
HIV/AIDS. However, if you-both women and advo- Disease Control and Prevention (CDC) announced durcates of women--do not take the time to call and write, ing a May 11 Congressional hearing on HN testing
others will make decisions about our lives. If you don't issues that the Survey is suspended, effective immediatealready know your representatives in Congress and on •ly.
the state level, I urge you to take a moment and find out.
Write to them and tell them your story. Sign the letter if Since the beginning of the epidemic, various legislators
you can, write anonymously if you don't want them to and interest groups have called for forced testing, names
reporting and other techniques to identify people with
know who you are.
HN infection. In some cases, these attempts have been
Now is the time for you to speak out. Many of you'have successful. In California, for example, sex workers and
never done this before, but you must find the courage to patients whose bodily fluids may have infected a health
do so. Laws are changing rapidly and those in positions care worker can be mandatorily tested for HN and have
of power are making them about you, not for you. If you their test results disclosed without their consent.
need help writing a letter, call NWAP or call your local
And if the current political climate is any indication, the
agency.
next group to face the prospect of mandatory testing will
In this issue of the newsletter you'll find article on the likely be childbearing women.
CDC infant HN survey and on Guardianship. Please
Controversy over newborns and perinatal transmission
read them. We all must plan and prepare for the future.
The drive to test pregnant women and new mothers has
Sincerely,
sprung primarily from the widely-publicized results of
the ACTG 076 study, which found that AZT could
reduce the chance of pregnant women transmitting the
virus to their fetuses. As soon as the 076 results were
published, they were seized upon as a light at the end of
the long tunnel of efforts to interrupt the HN transmisToni Young
sion process.
continued on page 2
Founder and Executive Director
NWAP is here to give voice to women living with
1
■
---------------------~--------------------HWSurvey
continU1:d from page 1
Largely overlooked were the concerns of women's health
and AIDS activists that they study was called off before
completion, that it only applied to HIV-positive pregnant women with high T-cell counts and no history of
taking AZT, and that the long-term effects of AZT on
both women and children were unknown.
Mandatory testing
The 076 results immediately sparked calls to mandatorily test pregnant women and, in some cases, to mandate
that pregnant HIV-positive women take AZT.
Mandatory testing legislation was introduced-but was
eventually either tabled or defeated-in New York,
Michigan, ·Pennsylvania, and Florida.
The problem for proponents of such legislation was that
mandatory testing is nearly universally opposed by HIV
advocates and public health authorities, including the
National Institute of Medicine and the CDC. The CDC
draft guidelines for health care providers regarding the
076 study explicitly recommended against mandatory
testing on the grounds that it may "result in some
women avoiding prenatal care altogether [and] ... may
adversely affect the patient-provider relationship."
The HIV survey in childbearing women
A prime target for 076-inspired legislation was the HIV
Survey in Childbearing Women. Since 1988, the CDC
has conducted the Survey in conjunction with health
departments in 45 states, the District of Columbia,
Puerto Rico, and the Virgin Islands. Researchers anonymously test blood specimens from 25-100% of newborns in each region to track the prevalence of HIV
infection among childbearing women in those areas. The
information is used to target care and services for
women.
Because babies carry maternal antibodies, newborn test
results only conclusively indicate the mother's HIV status.
HIV antibody tests cannot accurately indicate children's
HIV status until they shed their maternal antibodies,
usually 18-20 months of age. Although every child born
to an HIV-positive mother will initially "test positive,"
an average of only 20-25% of these children are actually
infected.
Because each newborn test in the Survey is performed
anonymously and cannot be traced back to an identifi■ 2
able individual, informed consent is not required and
women who participate in the Survey are not necessarily
told that it is being done. This is in accord with established federal regulations regarding anonymous statistical
studies.
HR1289: The Newborn HIV Notification Act
Following closely on the heels of proposed New York and
California State legislation, U.S. Representative Gary
Ackerman (D-New York) introduced HR1289, the
"Newborn HIV Notification Act," on March 22. This
bill would require states to record the infant's name with
each tested blood sample and report the maternal antibody status to the child's mother and physician and to
foster care authorities when appropriate.
This would change the Survey from an anonymous statistical study into a tool for making individual diagnoses
of HIV infection in women. But the bill makes no provision for informing' women that the test is being done,
counseling them about what the test means, or giving
them the opportunity to refuse it. Recognizing that
"unblinding" the Survey would result in testing childbearing women without their knowledge or consent,
Representative Ackerman has stated, "In an ideal world,
the best solution would be to counsel all pregnant
women ... [but] if this were an ideal world, this legislation would not be necessary."
continued on page 6
Soc.i al Security and women: what every
woman should know
This new booklet is now available at your local Social
Security office. The information in this booklet recognizes the changing role of women, especially the increase
in the number of women in the nation's workforce. The
booklet explains such things as the protection a working
woman and her family have if she becomes disabled or
dies or when she retires. It also explains what benefits a
wife or widow and her children can get on the basis of
her husband's work record and how remarriage or
divorce affects benefits. Social Security and Women can
also be obtained by calling Social Security's toll-free telephone number (800-772-1213) between 7 a.m. and 7
p.m. (EST) on business days. The lines are busiest early
in the week and early in the month, so it's best to call at
other times.
Caring for our children: Guardianship
Kristin C H Neil, Legal Services for Children
Part of caring for your children is planning for their
future. While difficult, it allows you a chance to be an
active part of that planning and to help ease the transition for your children. It is helpful to begin planning for
your children's future as early as possible. There are complicated issues involved in giving over the care of your
child to another individual, and these can be easier to
deal with while you are still healthy. Making early plans
can ensure that your children do not end up in the foster care system or with a parent or relative who you
believe would not provide a good home for your children.
Choosing someone to take care of your child when you
are no longer able to means looking at your support system and finding someone who you can trust. This can
often bring up issues around confidentiality and disclosure of your HIV status to family, friends, and your children. Involving your children in these decisions is an
important part of helping your children prepare themselves for the transition after your death and for facing
bereavement issues. Developing a support network of
people who you trust and who can help you with these
decisions is an important part of going through this
process. You deserve to be provided with the information
to help you make these choices and to be supported in
your decisions.
You have many options available to you, and it is important to discuss your unique needs with friends and
providers in order to determine which option is best suited to your situation. Naming a guardian in a will is one
possibility, but gives you no guarantee that the court will
go along with your choice after your death. If another
surviving parent or relative makes a claim that is different from your wishes, they may be able to get custooy of
the child. In an adoption, your child is given a new set
of legal parents, and you give up all parental rights.
Adoptions require going to court and are a longer, more
involved and more expensive procedure. Adoptions are
also a permanent option; they cannot easily be changed
once carried through. A Guardianship proceeding transfers all of your custody rights (rights to decide where
your child will live and go to school, and what kind of
medical treatment your child will receive) to a chosen
guardian. While you are still legally your child's parent,
you no longer have an active role in making decisions
regarding your child.
Recently, several states have passed laws that introduce a
new aspect to guardianship, called Standby
Guardianship. This option allows terminally ill parents
to make permanent plans without giving up their legal
rights. You may name someone to be the guardian of
your child, who "stands by" to take care of your child in
the event that you are no longer able to do so. This
option makes it possible for a parent to give someone
legal authority to take care of her child when she is ill,
and then to resume acting as a parent when she is feeling better. In California there is a variation on this law,
called Joint Guardianship. In Joint Guardianship the
parent shares authority with the chosen guardian, so that
both the parent and the guardian make joint decisions
for the child fron;i the time of approval of the guardianship. This means it is not necessary to go back to the
court to transfer authority from the parent to the
guardian. These guardianship options mean you do not
have to "give up" your children in order to create ~rmanent plans for their future. Rather, these options
allow you to play an active role in the creation of future
plans, giving you peace of mind and aiding the transition for your children.
Standby Guardianship currently exists in Florida,
Illinois, Maryland, New Jersey, New York, and
Pennsylvania, and Joint Guardianship in California.
Connecticut, Georgia, Indiana, Massachusetts, and
Wyoming are all working on Standby Guardianship legislation. In addition, various groups around the country
are discussing a National Standby Guardianship Bill
which has been introduced by Congresswoman Carolyn
Maloney of New York. To find out more about this
process, you may contact Kristin Neil from the Standby
Guardianship Working Group at the HOPE Project,
Legal Services for Children, 1254 Market Street, 3rd
Floor, San Francisco, CA 94102. 415-863-3762. Also
available from Legal Services for Children in San
Francisco in several languages; "The Guardianship
Pamphlet: Legal Guardianship in California, What It Is,
How To Do It."
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News from the National Institute of
Allergy and Infectious Diseases
Dendritic cells: A key to early HIV infection
fatal disease, may be too hazardous. HIV multiplies by
inserting its genetic material into that of its hosts' cells,
raising concerns that even if crippled so as not to cause
disease, HN could lead to long-term, unanticipated side
effects. To bypass this problem, NIAID doctors added to
HN a foreign gene that codes for a protein (thymidine
kinase or TI() that can be selectively killed by a drug
called ganciclovir. Under laboratory conditions, ganciclovir eliminated cells infected with HN-TK, suggesting
that after it has had a chance to work, an attenuated vaccine based on the HIV-TK clone could similarly be eliminated using ganciclovir.
Patrolling immune system cells called dendritic cells may
begin the HN disease process by carrying the virus from
the site of infection to the lymph nodes where other
immune cells become infected. "Dendritic cells probably
have particular relevance to HIV infection because they
are the first immune system cells to arrive at sites of
inflammation on mucous membranes, the major site of
sexual transmission ofHIY," says Dr. Drew Weissman of
the HIAID Laboratories. Dendritic cells travel through
the body and bind to foreign invaders, especially in exter- Chimpanzee vaccine modelprotects against HIV-1 infection
nal tissues such as the skin and the membranes of the Chimpanzees inoculated with one HIV-I strain can
gut, lungs, and reproductive tract. Once the cells resist later infection with a different strain, according to
encounter an invader, they ferry the foreign substance to scientists from the National Institutes of Health (NIH).
lymph nodes to stimulate T cells and initiate an immune Unlike humans, chimpanzees infected with HN-1 fail to
develop disease. The scientists reasoned that an HIV
response.
infection might act like a weakened live-virus vaccine
Drug-sensitive HIV could make safer AIDS vaccine
such as the Sabin polio vaccine. Subsequent studies
Experimental vaccines based on live but weakened or showed that chimpanzees can be protected from a subseattenuate forms ofHN could be safer thanks to a drug- quent challenge with HN-1, provided the animals are
susceptible HIV clone created by scientists at the first immunized with a potent attenuated live-virus vacNIAID. Although attenuated live-virus vaccines have cine. Experiments in progress will ascertain how the
been licensed for several other diseases, many scientists extent of virus attenuation correlates with resistance to
think that such a vaccine based on HIY, which causes a subsequent HN infection.
Resource list for holistic treatment and
information about HIV/ AIDS
compil.ed by River Huston, edited by Stan Hekva, and distributed by
the Womens Wellness Fund; April 1995
The third update of this valuable resource list is a way for
you to become and remain informed about treatment for
HN/AIDS. Introducing the list, River Huston writes
Don't look for a magic cure in this information. It is all
about supporting and strengthening the immune system as well as healing or alleviating opportunistic
infections related to HN/AIDS. Try one book or subscribe to a newsletter that appeals to you and read it
and go from there. I have been gathering information
on these kind of therapies for three years. I have found
that Traditional Chinese Medicine works best for me at
this time. It may work for you, it may not be what you
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4
are interested in. If you choose conventional therapies
there are ways to balance the toxic side affects . . . .
AIDS is a complicated syndrome, it is best to work
with a knowledgeable practitioner whether they are a
doctor, an herbalist or an acupuncturist, make sure
they are well rounded and up to date on what is going
on, in the field of HN/AIDS .... One last word, be
kind and gentle to yourself, the process of living is difficult and HN makes it that much harder. I have
found that HN has forced me to realize many things
about myself; it has been a motivator towards positive
change in my life, "a wake up call." This is one of the
possibilities of living with HIV Best of luck.
To obtain the resource list contact the Women's Wellness
Fund or River Huston both at 18 N. Main Street, New
Hope, PA 18938.
Conferences and Events
AIDS, Medicine, and Miracles
June 1-4, 1995; Omega Institute; Rhinebeck, NY
This is the eight annual AIDS, Medicine and Miracles
retreat, a supportive, healing environment for people living with HN/AIDS, their partners, loved ones, and
caregivers. The retreat explores all that holds promised
from both western medicine and alternative and complementary therapies. With a strong emphasis on caring
for the whole person, sessions are designed to touch the
heart and soul. Sessions include treatment issues, intimacy, grief and loss, massage, nutrition, acupuncture,
and more. The retreat includes two all-day seminars on
Thursday Gune 1): Women and AIDS, and Positively
Well Institute. Partial scholarships are available to people
who are HN+ and experiencing financial hardship. For
more information call 800-875-8770.
Educating About Sexuality
1995 Mid-continent Region Annual Conference ofthe
Society for the Scientific Study ofSexuality
June 1-4, 1995; Holiday Inn Metrodome;
Minneapolis, MN
This conference is open to professionals and students
interested in the latest developments in human sexuality
education in various contexts. For more information
contact the Society at 319-895-8407.
3rd National School Health Leadership Conference and
Conference on Preventing HIV Infection Among SchoolAged Youth
June 12-16, 1995; Westin Peachtree Plaza Hotel;
Atlanta, GA
These twin, back-to-back conferences are sponsored by
the Centers for Disease Control and Prevention and the
U.S. Department of Education.
Facing Our Challenges, Celebrating Our Lives: Lesb!an
and Gay Health in the 90's
17th National Lesbian and Gay Health Conference and
13th Annual AIDS/HIV Forum
June 17-21, 1995; Minneapolis, MN
Sponsored by the National Gay and Lesbian Health
Association and the George Washington University
Medical Center, the conference includes both pre-conference institutes and sessions focused on eight educational tracks: AIDS/HN forum, mental health, strate-
gies for inclusion, research, lesbian and gay health, substance abuse, education and prevention, and violence.
For more information call the conference office at 202-
994-4285.
National AIDS Treatment Advocates Forum
October 15-18, 1995; Century Plaza Hotel & Tower;
Los Angeles, CA
This is the first annual meeting for treatment advocates
and is sponsored by the Research and Treatment
Advocacy Department of the National Minority AIDS
Council and co-sponsored by the American Foundation
for AIDS Research, AIDS Project Los Angeles, Gay Men
Health Crisis, Project Inform, and the Treatment Action
Group. The goal of the meeting is to build dialogue and
coordination among AIDS research and treatment advocacy organizations. For more information contact David
Barre at 202-544-1076.
•. Coming Together, Moving Strong: Mobilizing an Asian
Women's Health Movement
November 17-19, 1995; Miyako Hotel; San Francisco,
CA
This is the first national Asian women's health conference
and the purpose of the conference is to provide information, resources and a venue for mobilizing and engaging
Asian women and girls in an Asian women's health movement, and to facilitate dialogue between the Asian
American community and policy makers. Workshop
topics will include mental health, sexual harassment,
reproductive health technologies, aging, alternative medicine, cervical cancer and breast health, environmental
and occupational health, HN/AIDS, nutrition, and an
examination of community-based health care delivery.
The conference is sponsored by the National Asian
Women's Health Organization. For more information
call 510-208-3171.
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HIV Survey
continued.from page 2
The arguments
Proponents of HR1289 have argued that the measure is
necessary in order to identify children who are HIVinfected to best plan for their medical needs. AIDS and
women's health advocates, whoa re nearly universally
opposed to the bill, have countered that the bill will not
identify HIV-positive children, will do nothing to
increase children's access to care, and will provide a disincentive for women to seek care for themselves or their
children.
Virge Parks, ACT-UP Golden Gate member and community consultant to Pediatric AIDS Clinical Trials
Group charged, "If Congress really wanted to do something about saving babies' lives they would fund focused
prevention programs for women and guarantee access to
prenatal care. HR1289 is mandatory testing for childbearing women, and will keep women and their children
out of care. To 'save' babies from HIY, we need to prevent infection in women."
Canceling the Survey
Activists had long expected that the administration
would caned the Survey if the Ackerman bill passed.
Because it is administered as an anonymous epidemiological study, the linking of names and test results would
require that the Survey be largely scrapped and rebuilt
from the ground up. But the CDC surprised everyone,
including Representative Ackerman, when it announced
the administration's decision to suspend the Survey during last week's hearing on HIV testing issues, well before
HR1289 was scheduled for a vote.
AIDS and women's health activists reacted angrily to the
abrupt announcement, charging that the decision to end
the Survey was political cowardice, and that the administration was more interested in avoiding controversy
than in researching women and HIY. Eileen Hansen,
President of the Women's AIDS Network and Public
Policy Director of the AIDS Legal Referral Panel
remarked, "Suspending the Survey makes absolutely no
public health sense. This decision may blunt Ackerman's
current effort, but it also caves in to political pressure
from those who would mandate testing and ignores the
importance of the Survey. No one disputes the fact that
this is one of the best tools for targeting care and services
for women. Why cut it now when women are one of the
fastest growing populations of people with HIV?"
Back to testing
Not surprisingly, media reports indicate that
Representative Ackerman may now pursue efforts to
require testing of all pregnant women and newborns. If
he is successful, and if the administration decides to permanently cancel the Survey, we will simultaneously
begin nonconsensually testing a significant portion of
the female population and end our best method for planning care and services for this population.pending. To
work against the federal and state "unblinding" bills,
contact Eileen Hansen or Rachel Maddow of the
Women's AIDS Network at 415-291-5454.
r-----------------------------------------------,
1996 National Women fr AIDS Summit;January 17-19 in New Orleans
D Yes! I want to help get ready for New Orleans.
D I/we would like to be co-sponsors of the 1996 Summit.
0 I can call people in New Orleans to help.
0
0
0
D
I wouild like to do a workshop.
I will begin working in my local community to find funding for women to attend.
I will send out registration applications when they are available.
I will write and tell you how I can help.
D No. I cannot participate this year. However, I would like to help support getting a woman
to the Summit. Here is my contribution of _ __
L-------~!_u.!:~~:_N_V:_A!;_7]£.9'..:.J!_r.:.e_!~~~!s!1~[i:~~_:'~;_2E~Oj_______ .J
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6
Proiect Inform fact sheets ancl discussion
papers
Project Inform (PI), based in San Francisco, is a grassroots organization focusing on the dissemination of
information on HN-related issues and treatments. PI
can be reached either through their national treatment
information hotline 10am to 4pm (Pacific Time)
Monday through Saturday at 1-800-822-7422, or at
1965 Market Street, Suite 220, San Francisco, CA
94103. Below are exerts from two PI publications.
Day One ... After Youve Tested Positive: Project Inform
Discussion Paper # 1
A positive HN antibody test is scary news to just about
anyone. Many people immediately fear it's a death sentence, while others just want to pretend it's all a mistake.
Whatever else it is, a positive test result is valuable news
that will actually make it possible to save your life. If you
didn't learn about it this way, you would have waited for
a serious infection to announce the presence of HIY.
Either way, you would have found out. But if you had
waited for the disease to announce itself, many of your
best medical options would already be lost. As crazy as it
sounds, learning that you're antibody positive-while
still healthy-is a lucky break. At least compared to the
alternatives.
Preventing PCP: Project Inform Fact Sheet
PCP Prophylaxis is the prevention of PCP (pneumocystis carinii pneumonia), a once rare lung infection.
Despite the availability of various preventive treatments,
PCP remains a leading cause of death resulting from
HIV infection. Many doctors treating people at risk of
developing PCP are still not prescribing preventive treatments, despite the fact that without prophylaxis over
80% can expect to develop one or more episodes of PCP.
A majority of all people with HN in the U.S. still receive
their initial AIDS diagnosis as a result of PCP. Clearly,
the best way to handle PCP is to avoid it altogether.
[The Fact Sheet goes on to discuss What Does the
Research Show?, What About Side Effects?, Who Should
Use PCP Prophylaxis?, and How to Use PCP
Prophylaxis.]
- - -1
Most testing centers also provide counseling to help people handle the news. The real work, however, is up to
you. Given the right treatment and the right attitude,
HN infection can be managed like a chronic illness, one
which you can survive. Making it so requires some effort
on your part. Several things are needed, just to get started:
•
•
•
•
Learning more about how HN works
Taking additional tests and learning what they
mean and what to do about them
Finding out about your options for intervention
Making changes in your life to adapt to your new
situation
Reading this Discussion Paper is a good first step. It's a
little long, but it's worth the time. It's about saving your
life.
[The Discussion Paper goes on to cover HN and the
Immune System, Monitoring Immune Health,
Intervention Against HIY, and Available Treatments.]
7■
NWAP
71 0 Eye Street SE
Washington, DC 20003
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